living after the death of a baby, living with Autism, living as a family of six, living on our organic homestead, living miserably, hopefully, and with joy, and somedays just living

It’s autism awareness month. I’m sure you’ve seen the light it up blue requests, the bombardment of awareness ribbons and colorful puzzle pieces, and the horrible contrived “post this to your wall if you care at all about autism, 98% won’t and are essentially the scum of the earth” type posts. I refuse to be coerced to posting something that spreads guilt and judgement – I refuse to post that type of awareness.

So instead of posting any of that fluff I’m going to tell you a little bit about living in my world. Today, 2014, with Elijah who is now almost 9. I’ll tell you about the guilt and judgement I do allow myself to partake in, and how I let it damage me and Eli.

It is Wednesday, so we have to go to dance after school today for the girls. It’s crowded, there are all kinds of kids everywhere and a gaggle of parents waiting in the smallish waiting area. Eli has been in school all day and because of scheduling Kyle is left to hang out with the boys at dance for 2 hours with the boys. The other kids run about, Eli takes this as a sign he can do the same, only he has less self-control. He smashes into walls, talks louder than everyone else, and grabs at other kids’ stuff, he hums and makes sound effects loudly. It’s frustrating, and embarrassing on some level. I don’t want to send a note to the entire club telling them our life story. That’s private. But it opens us up to all kinds of judgement.

And on the note of privacy, it astounds me how many people feel they have a right to know what’s “wrong” with him, people we’ll never see again, like people in line at the grocery store.

As much as it would be easier for me if autism was almost invisible on Elijah, it’s not. Most can plainly see after a smallish amount of time that there’s something just a bit different about him. That should be enough. I shouldn’t owe anyone any type of explanation.

I’m a soft people pleasing sort. Having a kid who can’t clue into that, or even understand why anyone would be, can be difficult for me.

Some places we go people will easily tell me it’s a discipline problem, or not so quietly say under their breath that he should be left at home, if he can’t behave. Other times I just get looks that convey the same message.

If people only knew how much more discipline my kid receives compared my other kids (who behave appropriately), or how many social skills classes we’ve taken, or how much socialization we’ve done.

There’s this tremendous amount of side eyes shot at me. I still have the hardest time dealing with it after all this time. What are we supposed to do? Stay home all the time? That comes with another type of bad parent judgement – “She’s not doing anything to help him make the situation better” judgement. It’s 6 of 1 half a dozen of another. Trust me, we skip out on a large number of things just because we know it will be too difficult either for Eli or us, often at the expense of our other kids.

There is so much to worry about when you have a child with special needs: acceptance of (his and yours), socialization, if he’ll ever have any friends, appropriate behaviour, wondering if you are doing everything you can to give him the best shot in life, education and how that will look, and the fact that everyone will judge him as less than for the rest of his life.

Guilt seeps in everywhere. I don’t have the time to work one on one with him every minute. I want to go unnoticed at an event. Some days I want him to at least act normal. As I said – guilt, for not accepting life as it is.

And so I walk forward, Elijah walks forward, and with numbers continually on the rise 1 in 68 according to the CDC this year, many more walk with us.

Some days we will navigate this life with ease, and others will be like walking over hot coals either for him, me, or the others in our family. It’s the only path we know, it’s beautiful and ugly. I love it and hate it. I will continue to strive for guilt and judgement to roll right past us without letting it affect us negatively. Elijah already does. It’s one of the beautiful things about him, he doesn’t see much in letting others’ opinions of him affect him… at least not often.

Last night I woke nearly hourly, at 9 months pregnant (tomorrow is my due date) that is hardly abnormal. I either had to pee or my hip was screaming at me to roll over. At 5:20 I had to turn, I noticed the baby wasn’t moving and thought “Well that should make it easy to fall back asleep”, but as a parent who has had a baby die at term in utero I placed my hand on my belly to wait for him to move. I fell asleep again before I noticed any movement.

This morning when I woke up around 6:15 I noticed he was still very still. I calmed the panicky voice in my head, rolled on to my left side, and waited for him to move. The alarm to get up and get the kids ready sounded, and I could wait no more.

“No matter” I thought. “I’ll get the kids dressed and make lunches. Surely, the distraction is what I need, and moving around is likely to get him rolling about.”

I made it down the stairs, peered into the kitchen and told Kyle right away, even though I had told myself I would wait to worry him. Kyle made me a coffee, that the toddler took an infinitely long time to stir for me. I wanted that coffee now. I took a few sips, then decided downing the whole thing at once would be best. A hot belly full of coffee would warm his toes, he would move, and that would be the end of the shallow breathing I had adopted. Fifteen minutes later, as I made grilled cheese and washed strawberries for lunches, there was nothing. After three glasses of full strength orange juice with no indication of a slight wiggle, I couldn’t take it anymore. I couldn’t pretend to be okay in front of my kids, who were being particularly sweet this morning.

I went upstairs to get dressed and called the midwife. I told her our baby was dead, a huge bubble of sobs poured out, she thought I had delivered and I corrected her. Arrangements were made for me to go to the hospital. I stopped crying, and pulled on the first pair of pants I could find, a pair of capris, even though the weather called for long pants.

The school bus had not arrived yet, it was 7:45, and I couldn’t bear waiting any longer. I told Kyle he could bring the kids to the hospital or stay and wait for the bus. He opted to wait for the bus. A flame of resentment flickered up.

I couldn’t find my glasses, so I borrowed Kyle’s to drive.

As I walked out I told Kyle “Today is going not going to be a good day” and left.

All this time I thought (hoped) any minute now I’m going to get a kick that tells me I’m being ridiculous. It didn’t happen.

The hospital is a 30 minute drive. About 10 minutes in I hit a point of resignment. It was all over. It had been hours since I felt him move. I was sure he was dead. I’ve never been sure before.

On my third subsequent pregnancy since Kate was stillborn. I’ve had plenty of scares. It was a fear more constant with the twin’s pregnancy, and less so with the last. I made 17 trips to the LD ward with the twins for non- movement, never for such a long periods of non-movement, and usually on the way someone would move, and I would head in just to be sure. With Natalia and Micah I never actually made a trip in to the hospital, or stopped in to see my midwife to be reassured. I feared they would die all the time, but I never felt they had, or were at risk, warranting a trip in.

This baby is a wiggler, perhaps the wiggliest, at least as wiggly as Kate was. Now it was going to be the same end.

Today I thought of things I haven’t thought of this time around. I have every other time. This being an unplanned pregnancy I have spent a lot of time thinking about how I was going to deal with a 5th living baby, not what we’ll do if he dies. Driving calmly without tears, poking at my belly in less than gentle ways, hoping, waiting for him to move, proving this trip was unnecessary. I thought of all the things I had avoided.

Where will we bury him? With Kate? With us?

I have to cancel a presentation.

We haven’t found a home church, who would do the funeral?

I’m just going to Facebook and Twitter. I can’t bear phone calls. Everyone finds out the same way this way.

Why was God doing this? Two dead babies and a kid with Autism who is currently not adapting well to school? Really what was I supposed to endure?

How was I going to convince the the hospital staff I could not wait for an induction? It would have to be today.

Who would pick up my kids from school? How would we tell them. Would they be okay?

How was I going to be a parent and grieve?

Have we actually settled on a name? Why haven’t we been using it?

Would I call Kyle to confirm he had died from the hospital, or just wait until he got there? How was he going to react?

Arriving at the hospital I let small tears roll from the corners of my eyes. My midwife met me at my car. I shook my head when I saw her.

“Nothing” I said, answering the question of if he had moved that she never asked, “It’s all over”.

She hugged me and walked me in. Calling for the elevator she said we’d know in a few minutes. I already knew.

After a coffee and three orange juices I went pee before laying down, so she could put the heart rate monitor on me. I stared at the curtain track and noticed that a couple of the hooks had come undone causing the curtain to sag in an nonuniform manner.

It only took a minute. A steady fast heartbeat.

“Is that me?” Certain it wasn’t, but I was sure it must be. I was still convinced I was about to get confirmation of the terrible I already knew.

“No”

I sprang up to sitting.

“Then why isn’t he moving?” shot from my mouth without consciously forming the thought, and a flood of tears I didn’t know I was holding back sprang forth. The sheer volume seemed more appropriate to the opposite news. The midwife handed me my phone to call Kyle. I couldn’t. There were too many tears. The relief and sheer disbelief that I had been wrong still needed to pour out before I could even physically dial. I had been sure.

When I did finally call to say he’s not dead, Kyle made me repeat myself, the sigh of relief from the other end of the phone told me he was as worried as I was.

So, I laid there listening to the thump of his heartbeat, in the silence, while waiting to find out what the midwife thought we ought to do next, knowing Kyle was on his way. Still wondering how it was possible my certainty was so wrong? Grateful it was.

A while ago Kyle and I watched Water For Elephants. It got me to thinking about the Circus, as a family we’ve only ever been to one. It was a cool day, so I think it was spring, and I’m pretty sure it was 2010, so the kids would have been 5 or about to be 5 (times 2), 2.5 and Micah would have only been a few months old. Yes, it was 2010.

The tickets were given to us, so it was a free outing. Well sorta… Kyle bought snacks at the concession, and we bought the kids colour changing sword light stick type things, that cost 15 dollars at the circus, or 2.50 at the dollar store, but hey, it seemed most other kids had something, and it was a free outing, plus we always say no. Kyle reluctantly paid 45 dollars, for the three toys that would break within the week.

With a family as large as ours, a trip to the movies is well over a 100 dollars. Normally it doesn’t bother me that we don’t get to go out very often, but sometimes it’s nice to feel like the family that can. It was nice to be out.

So there we were in our seats, I had the baby strapped to me and Kyle had Natalia on his lap because all 22 pounds of her wasn’t enough to keep the snap-closed seat open. We always feel vulnerable when both our hands are full. It’s hard to reach out and stop Elijah from running off, or pick him up off the floor, or grab his leg, so he stops kicking the seat in front of him. It turned out he was a star. The circus captivated that little guy, for the most part he sat and watched.

It was a small circus, the Shrinners I think, the pace was fast enough, and the show short enough so kids didn’t get itchy in their seats. Somewhere in the middle of the acts was an intermission. All the kids were invited down to the floor. There was a giant inflatable slide, vendors selling balloons, and other over-priced merchandise, and various circus performers were doing a meet and greet type thing.

While all the other kids filled down to to the floor to slide, and run around,we asked our kids to stay in their chairs. You see we couldn’t trust Elijah not to get over excited, cut in line, run around, bump in to kids, or who knows what – basically we couldn’t trust Elijah not to let his autism show. Then there was the fact that there were four kids and only two of us. I don’t know about yours, but our kids never run in the same direction. So, we sat there watching all the other kids actively take part in the circus while we held our place on the sideline.

Looking back on this day I feel quite a bit of regret, mostly because we didn’t even bother to give them a chance. From our seats we fielded the questions from the kids about why they couldn’t go. They complained, but accepted our no.

There have been many no’s, many times we held back because it was too hard to even try.

I wish I had said yes that day. I wish we let them go a bit crazy. I wish I hadn’t decided they needed to sit still and behave while every other kid got to let loose a bit – high five a clown, head down the slide backwards, or actually stand in the center ring .

Life is full of regrets, and as far as this one goes it’s fairly minor. What I don’t regret is that we all sat there together. We do things as a family. It was too hard to head down with a son with autism, a tiny toddler and a new baby, so there we sat – all together. When my kids look back on their childhood and think about the things they didn’t get to do, for whatever reason, I hope they recognize that when we went without, we all did.

I hope that this becomes ingrained in who they become. I hope they look back and think – what we did, and what we did not do, was done as a family. We supported each other. I hope when they see injustice, and they see someone singled out, they’ll have the courage, and strength of character,to sit with them on the side lines.

The world isn’t fair, it never will be, but sometime it’s nice to have a little company when fairness eludes us.

Fear paralyses me. I’m introspective because I think a lot. Thinking a lot means I imagine all the ways I might fail.

I’ve failed at maintaining this blog because of it. Fear. It occurred to that maybe this blog should have more focus, but what? Then it occurred to me that perhaps it’s getting too focused, on autism in particular. Then I got to thinking what do I want this blog to be? Are all the autism posts going to expose me too much, will people stop reading, because I complain too much? Will the people who follow me because of the autism connection stop reading because they couldn’t care less about my chickens? So I stopped writing to think about it. Now there’s a way to please everyone. Ooops, I guess not. Instead I’II go back to writing for me

I’ve also been really focused on a new Website. I’m finally finding myself at a point in my life where I think I can build something for myself. Become someone I want to be. Elijah is doing better than ever, and the baby, well… he isn’t much of one at all. I have a passion for knitting, and I’m good at it, really good at it.

With a little coaxing from a friend, she and I submitted a knitting book proposal to an agent. She loved it. She would represent it. Yay! But, it needed more polishing, and we needed a solid platform. Booo. We could have polished it, that would be easy. But as for building a platform, that was going to take some time and thought on how to do it.

Building a website could work. I’m fussy though, it couldn’t just be any generic site. It would have to be polished, look clean, professional and be able to compete with other knitting sites. As a one income family with a kid in therapy, others in activities, a mortgage to pay, and Kyle’s unknown employment next year there was no money to pay anyone. Fear. Could I get it to look good enough? How would we do it? It took us months to get the site up. It’s lovely in its simplicity. I think an expert likely could have done it in weeks. Thankfully, Kyle is a genius, and can figure just about anything out, given enough time. We learned CSS and HTML, we figured out plugins. I worked on content while Kyle worked on the majority of the tech stuff.

There was no way I could come up with a handful of patterns to feature in a short amount of time. So with my friend’s blessing we pulled our book, by choosing not to re-submit the proposal. Fear. I hope it was the right thing to do. I’m not sure, but it didn’t come without a lot of thought. The idea is that in the future with a strong platform I will have the same opportunity. Only l’ll have a stronger platform and I’ll be a stronger designer. Walking away still scares me.

I’ve decided to actually pursue knitwear. Fear. What if I’m not good enough? What if I’m not ready? What if I suck? What if knitters hate me? What if I’m wasting my family’s time on a pipe dream that will never happen?

Pushing past that fear, I continued to learn about web design and work on content. I submitted my designs to be test knit by other knitters. Test knitting proved that my first pattern…well… it sucked. Fear. The design was good, but boy-o-boy did it have a lot of mistakes. I am so lucky to have had an amazing tester who essentially took my hand and helped me make it right, she helped me do better, she helped me learn about proper pattern writing. Then she praised me, told me it was great, and lifted me up. She gave me confidence, and then said she couldn’t wait to work with me again. Praise God.

When I come up with an idea, it’s always big. So…I have big ideas for my site. It took me some time to accept that it wasn’t all going to be done when I first launched the website. Fear. I often fear that if I don’t do it all at once it won’t get done. I had to let it go. The site would never be ready if I kept waiting for perfection, so many of my big ideas are stuffed in my brain, waiting to roll out a little bit at a time.

I have a whole branding idea in mind, for that I needed a logo. As much as Kyle and I can figure things out, and as much as I have an idea in my mind, I stink at drawing, and the idea of trying to learn to use illustrator to come out with mediocre product was not going to be the best use of my time. I know an amazing illustrator, but I don’t want to take advantage of my friends, I’d want to pay him full out, and I was pretty sure I couldn’t afford it. Instead I hired another graphic artist who had an affordable rate in the hopes of having a graphic ready for when my website went live.

It didn’t happen, it wasn’t ready, and I decided that instead of waiting, my website could go live and still be “good” enough. It did well, I was pleased. I continued to wait for my vector (graphic design image). In the end it didn’t work out, not for lack of trying by my designer, but because it wasn’t entirely what I had in mind. I had already paid her, and I didn’t feel it was going in the right direction. I felt she had worked for the money I did pay her, and at this point she was now working for free. I wasn’t comfortable with that. People deserve to be paid for their work. It was a difficult decision to tell her to stop. Fear. I was stalled. I was working in the direction of what I was going to do with this logo. Now what?

Plan B. Actually talk to the illustrator friend. Nervous, I did it. After talking and emailing him I felt things were going to go in a really good direction I was excited. Then I got the cost. It was way too much for me right now. We probably could have made it work. I really wanted to make it work, but the stress on our bank account was just going to be too much right now. Fear. What the hell do you do when plan B doesn’t work out? And how do you settle for hiring someone with less vision when you think you’ve found the person you want to do it. How do you reconcile that you can’t spend the money when you know it takes money to make money? Well…I re-wrote Plan A: after some clear thought, I had to decide that there are better places to put that money right now. As much as I want a drop dead gorgeous website and clear direction for branding, working at improving my patterns, by paying a tech editor, test knitters, buying a dress form, yarn and perhaps taking some classes are all better uses for our money right now. My website looks good, and if that temporary photo needs to be temporary longer – it can be. It’s content that needs to be strong, no one is coming back for the prettiness if the patterns are not worth it. Not that I didn’t sulk. I did. A lot.

And now we’re here… today. Everytime you saw fear, I wanted to quit, I could have quit, but the thing is: I want this more than the than the idea of quitting feels good at the time. I’m scared I’ll fail. I’m scared people see me as a bit flaky, with several stay at home business attempts in my past. I’m scared I won’t be respected. I’m scared I won’t be loved. I’m scared it’s going to be harder than I think. I’m scared my luck is going to run out. I’m scared others are going to start later and get to the finish sooner. The thing is, now, here today, time has already been invested, and it’s not just my own, it’s the time of many others, Kyle , my kids, test knitters ,and the tech editor I did hire after serious conversation with another designer about how necessary it really is. There’s no turning back, and I don’t want to.

I know that it is impossible to fail at something you don’t give up at. It might take more time, and you might have to work harder than some (talk about a huge lesson learned from Elijah!), but you can’t get worse at something, only better. The only way to fail is to stop committing to its success. I have talent, it’s there, I am an expert at the things I know. These days I have office hours where we’ve made time in the week set aside for me to work. I have plans. I have patterns written in my mind, and even though I don’t know the right path to my success right now. I’m blazing it. I am committed to my happiness, and this makes me happy. I will be more than self-published, you’ll see me in magazines eventually, and I can’t wait to do book signings. It may seem overly ambitious, but I can’t dream small, it’s not who I am. I don’t expect to become a celebrity knitwear designer, but I do expect to become a knitwear designer. I want to be happy, and I want to be profitable. This is my beginning, it’s not everything I wanted it to be, but that’s what beginnings are for: starting, improving, a place to become more from. Now I just have to get over the fear of it not happening all at once, and the fear that I’m not ready. I am. It will happen. I will make it. It will take time. Expect big things from me.

You want to know what else I’m fearful of? Saying this out loud/hitting publish. I should probably just stop thinking right now.

These are the photos of me I like best. Blurry photos, or ones that are highly over exposed. They wash out my flaws, or make them invisible with motion blur.

I am a harsh critic.

It’s why I almost never turn the camera on myself. It’s why when others take photo’s of me I am very uncomfortable. I don’t like being on the other side of the camera. I have no control. I don’t get to delete.

And yet when my children grab hold of the camera, they often chose me to snap pictures of. I don’t want to rub off my insecurities, I want them to be fearlessly self-confident, so I let them snap away happily, excited they get to play with Mom’s toy. Then they pull up the album, and show me the best ones they took. They tell me how beautiful I look, and what great pictures they take, and I agree with them. I hold back the criticisms about not having my hair washed, the stain on my shirt, the unplucked eyebrows, and the other endless things I don’t like about me.

They think I’m beautiful.

I am what they want to capture on “film”, they see me as so much more than I deserve. I think I should try to see me through their eyes a little more often.

This morning I put a frozen pork roast in the crock pot to make shredded BBQ pork. There was a time I thought we’d never eat all the pork in our freezer after butchering out two pigs, but sure enough the stash is getting low.

Once I had it in the slow cooker in walks Petra “hack, hack, cough, cough” can we have soup for dinner? Now this girl never asks for anything, in fact, most nights end with us begging her to please eat something. So I said sure. I ran downstairs and grabbed some navy beans and set them on low to simmer, so I could make the soup in time for dinner. Thankfully it was 11 am because I didn’t have any beans canned, so I needed to cook them from dried.

So here it is my first posted recipe:

Anderson Acres Bean Soup.

2 cups dried navy beans or about 4 cups cooked/canned navy beans

2l pork stock or veggie stock

2-3 carrots

3 ribs of celery including the leaves

2-3 parsnips

1 medium sweet potato

2 cups of chopped kale, or whole trimmed spinach

4 slices thick cut bacon~ 3.5 oz (ham is also good)

1 1/2 tsp thyme

Salt and black pepper to taste (we like it rather peppery)

1 tsp fennel seeds (optional)

In a stock pot cover the dried beans with water. Set t0 medium heat and when it starts to bubble set to the lowest heat that still produces a simmer. Do not add salt to the water as it makes for tough beans. Simmer the beans until they are re-hydrated and firm to the bite but not cooked too soft.

While the beans are simmering cook the bacon until it is crisp, but not crunchy. Remove grease and cut into 1cm (1/2 inch) pieces.

Strain, and rinse the beans. Put beans back in the stock pot, and pour in the stock, and add the bacon. Simmer on low heat for about 1-2 hours.

While the soup is simmering chop the vegetables into chunky slices 1-2cm (1/2 -1 inch) pieces. Once the beans have simmered an hour or two, add the vegetables and simmer 1 hour on low.

During the the last half hour of cooking add the sweet potatoes, thyme, ground pepper, fennel seeds, and salt. If you are using kale add it now, if using spinach add it during the last ten minutes.

Serve hot, I add two or three dashes of tobasco (Mmmmm).

I don’t know how many calories or how much fat is in this soup. I don’t watch what I eat, other than to watch what I buy. We buy real meats and produce, we try and buy local as much as we can/want, we buy a minimum of processed foods, and raise our own free range pork and chickens. In the winter we feed them organic grains and food scraps from our mostly organic kitchen, in the Summer most of their food comes from forage and garden weeding. My BMI is perfect for my height, and we feel good about the food we eat, my kids don’t know that soup comes from a can other than what we preserve in our own mason jars. For them real food is normal, and I love that.

Oh, and dinner for tomorrow is done too, the pulled pork is done, and just needs to be reheated. That worked out well.

When I’m telling people that Kate died, I never say she passed away. Actually I kind of cringe at that expression, passed away to where, passed what? I don’t begrudge others from using it to describe the death of their loved ones, people should say what they feel comfortable saying. For me its a little too soft, too pretty, too acceptable. In fact part of me likes the shock that comes from saying that our baby is dead, if I can be perfectly honest. It’s a particularly difficult chapter in my life, and it shouldn’t be easy to say. In fact the two most difficult things for me have been Kate’s death, and Elijah’s autism.

Autism isn’t the tragedy that Kate’s death was, in fact it’s hard to call Autism a tragedy, but for many of us, Autism means worrying about tragedy.

Part of what makes Autism so difficult to deal with is the tendency that many kids with autism have to wander. To make matters worse a lot of kids with Autism seem to be missing the ability to feel fear, or sense danger. I can think of two incidences with Elijah that makes my blood stop.

One day while putting his baby sister upstairs to bed, Elijah undid three locks on the front door and let himself out, naked. Thankfully it was summer, not winter. We lived in Chicago, at an intersection of two very busy roads, Western Ave and 119 street. When I came downstairs the first thing I noticed was he was missing, and the door was open. The police were called, and I frantically searched the area asking passer by’s if they had seen him. The truth was, since he loved cars I feared he was already dead. Traffic doesn’t stop in Chicago, crossing the street is a ridiculous danger. To make a long story short he was found safe, and sound, and I was never the same.

A few months later while on a trip to see a Floortime therapist, we were taking Ky’s car instead of the van. I strapped Elijah into to his booster seat, both age and weight appropriate for him. A half an hour later while going 70 miles/110km an hour down I-94, Elijah undid his belt, and opened the back door. Luckily the force of our speed made opening the door difficult, and it shut again. I pulled over, yelled at him, called Kyle, cried, and belted him back in, and always used the 5 point harness seat. Death was too close again.

When we lost him in line at Disneyworld while waiting to see one of the 3D movies, Kyle didn’t hesitate for a second to pop up on a rail, so he stood above the crowd, and shouted at the top of his LUNGS: ” Attention, my son with Autism is missing, he has a blue shirt on”, and then gave a description. In a matter of a only a moment he managed to get to the other side of a packed lobby of a few hundred people without any concern that he couldn’t see his parents. A few moments more he may have found an exit, and few more and who knows.

During these scares Elijah didn’t speak more than a handful of words. If kids are found wandering and are unable to tell an adult who they are, or where they live, they are more likely to be abandoned by that adult, because they are unable to help immediately. The older the kid, the more likely this is, in fact a wandering 16 year old isn’t likely to be approached with help at all.

Today I am a wreck over beautiful Adam Benhamma, Adam wandered away from the people he was with. The “fading hope” has me feeling helpless. As I sit here typing this blog out, his family is worrying about whether they will be arranging a funeral tomorrow. As a mother I’m heart broken for them, as a mother with a son with autism I can imagine it could be me, as a mother who’s buried a child, I hope above fading hope that he’ll be found. Adams Story

More and more we hear stories of kids with Autism dying due to wandering. With our collective US and Canadian governments refusing to see Autism as an epidemic, even with a a rate of 1 in 110, and as high as 1 in 65 in some pockets, we should all get ready for more autism deaths. Autism is killing our children by robbing them of a sense of danger. Children are dying from incidents that stem from their Autism. And just like babies dying, there is no gentle way to say that.

Part of me wonders if the outrage isn’t as strong as it ought to be, because it’s not normal kids dying. These are the weirdos, the kids who bang their heads, the ones who don’t talk, the ones who scream, who hit and bite, the ones who spin in circles, and flap their hands. The ones whose mothers and fathers love them dearly, whose bothers and sisters don’t care that he/she isn’t the same as other kids, the ones who have a special bond with the family pet, because animals don’t judge, the ones who love back in unconventional ways. We should all be outraged.

Elijah is getting better, he bolts less often, we can keep him engaged more these days, and he’s learning to play with his sisters, so he stays near more often now. I can look away for a second, and it’s okay. But when I can’t find him, my heart goes straight back to that place that has me wondering if we’d bury him beside his sister, and what we’d write for his epitaph.

So what can you do? Other than donating money to an Autism charity?

Parents of kids with Autism are often tired, its an extreme sort of parenting. We feel like we don’t fit. It can be hard for us to make other mommy and daddy friends, because parents would rather their kids didn’t play with ours. So here’s some of my suggestions of what you can do.

If you are good friends, offer to babysit in their home, so mom can have a nap. But don’t expect a yes until you really learn what it means to babysit a kid with autism, take the time to learn what the dangers are, are they likely to bolt, drink/eat things they shouldn’t, and what kind of attention they need. Find out what sets him/ her off, find out how to calm them, what they can and/or will eat, and how they communicate. Plan to spend some time with them beforehand, so the he/she trusts you. Don’t be offended if we come down from our “nap” several times, it’s not that we don’t trust you, it’s just that we need to know our kid is okay, shooing us away is not the answer. Know that that even the shortest break is appreciated, and if you keep offering help, and you seem to truly be able to handle our kid, we really will sleep eventually. The reason most of us say no to your offers to help is because we know you can’t handle our kid, we don’t mean that condescendingly, we know that some days it’s almost too much for us, and we’ve eased into it from infancy, it’s important to us that you know what you’re getting into.

Short of that, you should know most of us have been shunned at moms groups, gym class, ballet etc. if not outright kicked out. Befriend the mom with the odd kid in art class, be friendly, be kind, be open, and check your judgement of what kind of kid and/or type of parents they must be at the door. Over time maybe invite us over for a playdate?? When that playdate ends with the kids not playing together, toys played with in other ways than their intended use, and with shrieking and/or complete silence, and with the mom hovering over the kids, invite them to come over again!

Short of that, make a meal, shovel a sidewalk, mow a lawn, or volunteer with an organization that makes a positive impact to individuals with Autism.

Short of that, donate your internet space on Facebook, Twitter, or other social media to promote Autism Awareness, Autism reform in your State or Province, or to support a family who is struggling (make sure they are okay with you sharing their struggle). This month it’s easy, April is Autism Awareness month.

Short of that, when one of ours kids goes missing in your community, help us find him or her.

And today pray for Adam, Adam’s family, and for all families dealing with Autism. Pray often for fewer deaths, more acceptance, and better programs to help individuals with autism make meaningful and positive contributions to an more inclusive society.

“fading hope” has me feeling helpless. As I sit here typing this blog out, his family is worring about weather they will be arranging a funeral, tomorrow. As a mother I’m heart broken for them, as a mother with a son with autism I can imagine it could be me, as a mother who’s buried a child, I hope above fading hope that he’ll be found. Adams Story